Month: March 2018

With each year I attend the National Psoriasis Foundation’s Capitol Hill Day I become more and more familiar with the routine. I wanted to write this blog in order for you to understand exactly what goes on in DC both before and during our advocacy. Now mind you, there are many voids to fill in our community. I’m sure some of you have felt some of the inefficiencies of our Healthcare System. As we all know there’s a lot of issues and many dollars wasted because of the bureaucratic red tape. It’s up to our elected officials to do their job and to eliminate wasteful spending and to improve Healthcare as we know it. Let me assure you this is a bipartisan issue. My focus is to restore the authority to our prescribing doctors and to put the #patientfirst.

Nevertheless we are focused on the laws that govern our community. So first things first let me walk you through the day before Capitol Hill day.

Many of us who were invited by the National Psoriasis Foundation were either ambassadors or advocates. This year many people wanted to attend. That is why I never take it for granted and I’m honored to be part of this opportunity. So on the 19th of March I flew in to DC from New York in order to participate. Click the hashtag #NPFADVOCACY for more stories about this day.

Our Mission: To Drive efforts to cure psoriatic disease and improve the lives of those affected. (NPF)

Before our trip to DC we had a hour long conference call that briefed us about what was to take place on that day. I’m glad the call was recorded so this way I was able to listen once again in order to know what is expected of me. The call started promptly with our federal Government Relations VP Patrick Stone and our Government Relations and Health Policy Manager Jessica Nagro. The call was on point and very resourceful. Also on the call was Amy Prentice who is also part of the NPF Advocacy team.

So the night before Capital Hill day we had a prep dinner hosted by the National Psoriasis Foundation. We receive training packets that was loaded with information in order to prepare us for the next day. Patrick Stone once again started us off. Leah Howard COO of the NPF also spoke and brief us about our organizations mission. Jessica Nagro spoke about the information in the packets. The seating was by states. This way we could practice our lingo in order to prepare. Patrick Stone had four people role play the office visit. They acted out three scenarios each one better then the other. The first act they mentioned the wrong disease state…we all had a laugh.

So that night I was extremely restless, I didn’t get much sleep. I later contributed it to the supposed decaf coffee I consumed at dinner. Anyway, needless to say I was early for breakfast. This isn’t my first rodeo so I went down in my NPF cycle shirt and jeans. Everyone else was in their suits. ( I’m thinking newbies) Said my hellos and went back to my room to change. Dressed up and got ready to give them the “what for”.

I was very happy with our team. We had a student doctor and a lawyer. We also had Heather Miller who lead the way. We were well prepared. I brought a picture when I was covered in psoriasis. When that photo was taken I felt I had one foot in the grave. I was ashamed, alone, and extremely depressed.

I’m so proud that I was able to share my story with these elected officials. We spoke mostly to health policy staff members who seemed to like what we were saying. I wanted to bring a message that was relatable. I told them I was like everybody else who wanted to live the American Dream. I was a father of two impressionable children. A lieutenant fireman/EMT, a soccer coach, a business owner and a postal worker. All that changed when my disease became to aggressive to bare. Then I explained our “asks”, I thought they were reasonable. To me this fun. I love listening to my colleagues and hearing the feedback from these officials.

I would have to say all of the staff members agreed with our agenda. It was a bipartisan approach that put the #patientfirst. It just makes sense. I have to say our last meeting was my favorite for two reasons.

1. It was my district

2. We met with the member.

So exciting that we actually met with Representative Rooney from SW Florida. We saw him in action running around with papers in his office. We first met with his chief of staff and then got to shale hands with Rep Rooney in his office. It was there where I briefly told him the importance of our visit. I explained our asks and he was very in tune with our agenda. He struck me as a no nonsense sort of guy. Like a drill sergeant. He articulated very well. His last comments were that he looked forward to seeing me in SW Florida. Now you know I will be paying him a visit at his local office in our District… Knock, Knock, Knock.

Get involved, your voice matters. If you need to find me I’m usually helping others with our disease in our support group Overcoming Psoriasis at http://www.Facebook.com/groups/psowhat. If you want resources about psoriasis then I highly suggest visiting the NPF website http://www.psoriasis.org. Thank you for reading.. please follow and subscribe.

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Once again the National Psoriasis Foundation and it’s team of advocacy advocates will be heading to Washington DC to address the issues facing the psoriasis community. We will be talking to congressional leaders about our proposed Appropriations bill and Step Therapy bill. https://www.congress.gov/bill/115th-congress/house-bill/2077

These bills if passed into law will not only help the psoriasis community, but will also help other auto-immune disease communities. The one bill that addresses “step therapy” just makes common sense. The bill will simply fill prescriptions as written by your doctor. You will no longer need to “fail first” a less safer, less effective, less expensive medication before the original one is dispensed. Here is a copy of the letter that I sent to my congressman;

NPF template;

“As a constituent affected by psoriatic disease, I am writing to urge your support for a FY 2019 appropriations funding request to expand research in psoriasis and psoriatic arthritis.

The requested FY 2019 funding will build upon the foundation of the Centers for Disease Control and Prevention’s (CDC) public health agenda on psoriatic disease. Specifically, the $1 million request would support research on the connection between psoriasis and psoriatic arthritis and other chronic conditions. As psoriatic disease is one of the most prevalent autoimmune conditions in the country, it is critical that we invest in public health research to better understand the disease, its connection to other chronic conditions, and interventions to improve health, well-being, and quality of life.

Congresswoman Wasserman Shultz (D-FL) and Congressman Costello (R-PA) circulated a Dear Colleague letter earlier this week and I respectfully urge you to add your name to the letter. This modest funding will go a long way to advance care for the more than 20,000 psoriatic disease patients in your district and the 8 million affected nationally.”

Please contact Kaitlyn Lane in Rep. Wasserman Schultz’s office at kaitlyn.lane@mail.house.gov or Elle Ciapciak in Rep. Costello’s office at elle.ciapciak@mail.house.gov if you have any questions or need any additional information.

I hope you will consider supporting the Dear Colleague and the funding request. I look forward to hearing from you about this request.

Your voice is important to our community. Your voice will fund critical research needed for better treatments and/or a cure. Your involvement will improve the SOP’s by which prescriptions are filled. Let’s stop the common practice of undermining our highly educated doctors and fill the prescriptions as written. Makes sense!